tag:blogger.com,1999:blog-3605254543761446258.comments2019-01-21T16:29:11.824-05:00Wheelchair KamikazeThe Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger8371125tag:blogger.com,1999:blog-3605254543761446258.post-56806750286615062082019-01-02T09:13:16.437-05:002019-01-02T09:13:16.437-05:00Hey Bub, Good to hear from you. I&#39;ve been thi...Hey Bub, Good to hear from you. I&#39;ve been thinking/worrying about you a lot lately. Hang in there and Happy New Year!<br /><br />CharlieTunanoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-77927190702178778252019-01-01T22:52:42.123-05:002019-01-01T22:52:42.123-05:00Wishing you all that is prayed for in 2019. Your w...Wishing you all that is prayed for in 2019. Your words always inspire this journalist-photographer who ended a career through MS - SPMS now. I try to aspire to be a wheelchair warrior even if everyone is safe with my slow-driving around the house.Roland Clarkehttps://www.blogger.com/profile/03302133565980901397noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-20535412240436386472019-01-01T18:49:23.788-05:002019-01-01T18:49:23.788-05:00Oh Marc, this really gelled with me. Every day I s...Oh Marc, this really gelled with me. Every day I see people living their lives to the full, walking unaided, lifting a glass to their mouth with one hand and spilling not a drop, and wonder if it occurs to them how lucky they are. But I was like that, never gave it a thought ... so let them enjoy their obliviousness. All the best possible to you and your wife for 2019.Jen Severnhttps://www.blogger.com/profile/06368790694428897566noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-11120524107604024462019-01-01T14:54:16.192-05:002019-01-01T14:54:16.192-05:00Marc! good to see a post, been worried about you!
...Marc! good to see a post, been worried about you!<br />i&#39;ve read this post every year and it always gives me a sigh. i was diagnosed but a short 4 years ago (had symptoms quite a few years before, ofc, but it is what it is), but i&#39;ve already lost so much to this monster of a disease. i can do nothing but kiss my Husband and lean on Him for support when i need to. Which is often. But thank you for your posts, hun.kyttennoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-30423315116956870992019-01-01T14:48:20.237-05:002019-01-01T14:48:20.237-05:00Marc, you truly have a way with words. I have rrms...Marc, you truly have a way with words. I have rrms, 15 yrs down that road, and mostly in a wheelchair these days, and you hit the nail with thisVeronica Wilsonhttps://www.blogger.com/profile/12712806863297779832noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-16960486296963471472019-01-01T14:19:16.937-05:002019-01-01T14:19:16.937-05:00No I didn&#39;t, there it is above!No I didn&#39;t, there it is above!Susan Smithhttps://www.blogger.com/profile/00836994327617884477noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-62932958228296915352019-01-01T14:18:32.625-05:002019-01-01T14:18:32.625-05:00I just wrote a great reply to this and then lost i...I just wrote a great reply to this and then lost it. Sorry. Hi anyway, basically I appreciate you!Xx Susan Smithhttps://www.blogger.com/profile/00836994327617884477noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-6415793680035068642019-01-01T14:16:56.086-05:002019-01-01T14:16:56.086-05:00Hi Marc, I have read this every year you posted it...Hi Marc, I have read this every year you posted it and I have ppms too so I have some idea how you feel. My diagnosis came a little later than yours 2010 but I had symptoms before that. Ppms is about the same whoever you are isn t it? Anyway I am with you and I appreciate your words greatly,that slowish slide of abilities described so well. Keep going dear man, you have your wife with you to kiss on New Years Eve as I have mine (husband) which is surely a great comfort when life is hard to take. Susan Smithhttps://www.blogger.com/profile/00836994327617884477noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-56124871611090533572018-10-22T21:33:03.996-04:002018-10-22T21:33:03.996-04:00Brilliant and hilarious essay Marc, making me glad...Brilliant and hilarious essay Marc, making me glad I didn&#39;t try to become a writer - the competition is too good. Your idea for an MS Twilight Zone episode is genius, however given the MS parthenogenesis I think you should have featured my favorite episode: https://www.youtube.com/watch?v=r6FmKywruuI&amp;t=40s (full episode not available).Unknownhttps://www.blogger.com/profile/16253986360378009587noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-66177514022428064932018-10-22T17:21:16.205-04:002018-10-22T17:21:16.205-04:00I really enjoyed re-reading this insightful essay....I really enjoyed re-reading this insightful essay. And &quot;To Serve Man&quot; is of course a top-notch episode of TZ! Here&#39;s a little about the writer who penned the amazing tale the episode is based upon: <br /><br />Damon Francis Knight (September 19, 1922 – April 15, 2002) was an American science fiction author, editor and critic. He is the author of &quot;To Serve Man&quot;, a 1950 short story adapted for The Twilight Zone. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-51133295539328391342018-10-22T06:57:56.787-04:002018-10-22T06:57:56.787-04:00Kaplans newspapers, magazines and smoke shop... th...Kaplans newspapers, magazines and smoke shop... thanks for the memories! Good to know you&#39;re still pushing.<br />Thanks Marc<br />Tom HeeterTom Heeterhttps://www.blogger.com/profile/11499468899691921035noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-28987839605472033512018-10-19T13:15:36.452-04:002018-10-19T13:15:36.452-04:00Ah, you are such a good writer! And though not phy...Ah, you are such a good writer! And though not physically, still mentally kicking. Glad you are clawing your way back. Helenenoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-24737977515915477242018-08-24T19:35:13.105-04:002018-08-24T19:35:13.105-04:00UTIs are not uncommon among those of us with MS; h...UTIs are not uncommon among those of us with MS; however, the fact that you have never had one before the use of Rituxan makes me think it is the culprit. I have commented about Rituxan on your blog several years ago. As a former oncology nurse, Rituxan was my favorite drug as a biotherapy agent for those with certain oncology diagnoses. It was wonderfully effective and is now being used for more than oncology treatment. But, it is a big gun and you never know how it may affect an individual&#39;s immune system. I am truly sorry to hear that you have had such a struggle with repeated urinary tract problems - they are awful. Like Tysabri, which is effective with so many people that the few who are negatively affected do not keep it off the market, Rituxan may have a few users that cannot tolerate the side effects.Mary Beth Knapphttps://www.blogger.com/profile/12879986297353198628noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-40717062870974874872018-08-24T13:55:03.059-04:002018-08-24T13:55:03.059-04:00This comment has been removed by the author.Mary Annhttps://www.blogger.com/profile/14551713995531943847noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-11762579573140378522018-08-23T03:42:01.939-04:002018-08-23T03:42:01.939-04:00I find it almost incredible how many people have c...I find it almost incredible how many people have come forward with their own UTI horror stories since I started writing this series of posts. Like we don&#39;t have enough to deal with!<br /><br />I hope the low-dose antibiotics keep working, and that you are able to avoid any further infections. I&#39;m assuming that you are on probiotics as well, to counteract whatever bed affects the antibiotics may have on your gut…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-10253391258837388772018-08-23T03:39:59.613-04:002018-08-23T03:39:59.613-04:00Good grief, that&#39;s horrible news about your da...Good grief, that&#39;s horrible news about your dad. I&#39;m not sure that I knew your father had MS as well.<br /><br />In doing my research I am now aware that a UTI left unchecked can be a very dangerous thing. Infections in general are like kryptonite for PwMS, but these UTIs seem to be especially corrosive.<br /><br />I&#39;ll have to check on the cystex. Thanks for mentioning it.<br /><br />Hope all is as well as can be with you…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-43798355181495428592018-08-23T03:35:49.553-04:002018-08-23T03:35:49.553-04:00Hi Melinda, I&#39;m happy that I could make you la...Hi Melinda, I&#39;m happy that I could make you laugh. This essay in particular included some linguistic flourishes, and I did write it in a style that isn&#39;t quite my own. It actually did feel like I was a little bit possessed, thinking I might have picked up the tempo of the language because I just watched &quot;Alias Grace&quot; on Netflix. I&#39;ve always admired the short, direct style of Hemingway, but I seem to be completely incapable of keeping things pithy. The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-36222951785816383762018-08-23T03:32:41.129-04:002018-08-23T03:32:41.129-04:00Hi, thanks for the info. I&#39;ll have to look int...Hi, thanks for the info. I&#39;ll have to look into the candida angle. That&#39;s something else to bring up with the neuro. I do know that I&#39;m no longer running a fever, but I am still feeling quite unwell. Figured it was just my body taking its sweet time recovering from what it&#39;s been through, but it sure feels like there&#39;s still something going on. I do take a strong probiotic, so hopefully that has helped… Thanks again.The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-53178640878880920672018-08-23T03:29:43.361-04:002018-08-23T03:29:43.361-04:00Hey Mary Beth, I&#39;ve been wondering that same t...Hey Mary Beth, I&#39;ve been wondering that same thing myself. Seems to me that having a large portion of your immune system deactivated would lend itself to getting infections, or at least hinder fighting off infections. I do know that I never had a UTI before, so there&#39;s that…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-7842465553405286792018-08-23T03:27:21.327-04:002018-08-23T03:27:21.327-04:00Hi Sue, glad to hear that you are six months UTI f...Hi Sue, glad to hear that you are six months UTI free. Hopefully, six months from now, I&#39;ll be able to say the same thing. I&#39;m doing apple cider vinegar, cranberry juice, and probiotics. I think my neurologist wants me to get on high-dose vitamin C and something else in combination, not sure what that something else is. Supposed to talk to him on Friday. And, hey, if it is placebo, well, placebo is a real physiological phenomenon, so I would take it, too…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-87890241069502308212018-08-23T03:25:09.107-04:002018-08-23T03:25:09.107-04:00Thanks for your comment. Yes, enough IS enough. An...Thanks for your comment. Yes, enough IS enough. And as for giggling and snickering, please, be my guest. I know that if I didn&#39;t find some humor in this situation I would surely go mad…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-58135480017958800182018-08-22T14:26:19.580-04:002018-08-22T14:26:19.580-04:00https://saurabhms.blogspot.com/?m=1https://saurabhms.blogspot.com/?m=1saurabh chowdhryhttps://www.blogger.com/profile/00484716869206236611noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-79926755247544578562018-08-22T03:37:06.253-04:002018-08-22T03:37:06.253-04:00You&#39;re right...UTI&#39;s suck bigly. I have to...You&#39;re right...UTI&#39;s suck bigly. I have to take a low dose antibiotic every day, it has helped keep the Urologist away. *sigh* Kris Kastlerhttps://www.blogger.com/profile/10980298856423864302noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-20873395378114011722018-08-21T18:47:13.802-04:002018-08-21T18:47:13.802-04:00If I remember from your earlier post, you said you...If I remember from your earlier post, you said you had avoided a UTI until this recent series. Sounds like this has more than negated your previous string of urine -related &quot;luck&quot;. My father (also with secondary progressive MS) ignored symptoms of a UTI back in April and ended up septic in the hospital with a fever of 105°. He took such a hit that he now requires 24 seven care and left the hospital with a nasty bedsore. When he was first admitted to the hospital the UTI could have been dubbed the Ultimately Terminal Illness, but luckily the IV antibiotics did the trick. Have you heard of cystex? Dr. Calabresi recommended he take it twice daily for preventative reasons, and thus far it&#39;s been very helpful! Keep the faith, there must be light at the end of this tunnel…Kate Hookshttps://www.blogger.com/profile/11830951897506069563noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-15239781484274228622018-08-20T12:16:09.979-04:002018-08-20T12:16:09.979-04:00Marc, You are a gift to the MS community. Your pos...Marc, You are a gift to the MS community. Your posts make me want to laugh out loud and they’re always so immaculately worded and so funny! I really hope you get over the dread UTIs (whatever that stands for).Melindahttps://www.blogger.com/profile/04059069463814983523noreply@blogger.com